Thursday, January 29, 2009

Last friday, Rick and I took Queen Teen to the Low Vision Clinic at UC Berkeley for an assessment. It had been five years since her last evaluation and we wanted to see if there'd been any changes. Plus, Queen Teen is eager to read and has been picking out sight words like "the," "and," and "there." She can identify items from a list by looking for the first letter of that word (M for "milk") and keeps asking "What is that word?" If there's any chance she can learn to read, then I will do everything I can to help her.

Laura Fogg, her Orientation and Mobility instructor, met us at the clinic. I invited her because Queen Teen has been less than cooperative at appointments. Even something as simple as a quick doctor's visit for itchy skin can become a tearful battle. Between adolescence and the hundreds of doctor's appointments Queen Teen has had to go through since birth, I can understand her lack of enthusiasm about ANOTHER appointment. Laura seems able to draw Queen Teen from her shell, plus she works with her at school so would have more info than I about how Queen Teen uses her vision.

As expected, Queen Teen was NOT happy to be there. She went along with the visit for a while, but as soon as it got too hard, or went too fast, she shut down and refused to lift her head. Then when the doctor tried to put glasses on Queen Teen to test lenses, Queen Teen kept shoving them off her face, once knocking the lens completely out of the frame. The doctor went too fast for Queen Teen to keep up, quickly switching from one task to the other before Queen Teen fully understood what she was supposed to do. I understood why the doctor was in such a hurry, but I wish she had taken more time to show Queen Teen what each test was and how it worked. Queen Teen is a curious person and likes to examine and question objects before they're shoved in front of her face.

There were times when Queen Teen got into the games, laughing when she stuck her finger into the hole on the contrast cards and playfully snatching the light wand during the visual fields test. She played with Laura and answered questions clearly, saying "I can't see that." I was proud of how she spoke up for herself, telling us when she could or could not see something and asking questions about what was happening. This is not a passive Multiply-Disabled child; this is a girl who is capable of understanding what is happening to her and expects us to explain WHY we're doing it.

Happily I can report Queen Teen's vision hasn't changed much in the last five years. Unlike her hearing and ataxia, her vision is stable. The doctor changed her prescription just a little to accommodate nearsightedness and astigmatism, which are actually normal changes most children experience as they grow. She's seen an opthomologist every year to check her eye health and her doctor has said it didn't appear that Queen Teen's vision had changed (her doctor is a certified Low Vision expert, so I know this woman knows what she's doing). Now we have verification from two Low Vision experts that Queen Teen's eye condition is stable and we don't expect it to worsen any time. Thank goodness!

We also talked about ways to help Queen Teen read and discussed the use of a CCTV. I'll look into getting her one for home use. Because of how bad the budget is in California, I expect a battle finding someone to pay for a CCTV, but if that's what Queen Teen needs to successfully learn to read, then I'll find a way to get her one, even if I have to hold a bake sale!

Sunday, January 25, 2009

When Queen Teen catches a cold, it can be a very big problem. Motor control difficulties and sneezing do not mix. She tries very hard to grab a tissue, but she simply can't get it out of the box and up to her nose before she sneezes. So she gets a lot of snot everywhere; all over her shirt, in her hair, on her face... everywhere.

There are boxes of tissues in every room. I keep fist-fulls in both pockets. Queen Teen keeps a box on her walker and another on the floor beside her while she plays. Her hair is pulled back tightly with extra hair-ties and clips. She wears an extra shirt over her t-shirt so it's easy to change when necessary. We're as ready anyone can be.

ACHOO! Uh oh... I spring into action, grabbing a tissue from my pocket as I run to her room, intercepting a thick string of snot hanging from her nose down to her chest. I grab it with the tissue and quickly pull it from her nose, wrapping it in the second tissue I grabbed from the box beside her, trying to wipe if away before she twists her head from my grasp and drags the snot-string across her face.

"Yuck!" she says, reaching up with her own tissue to wipe herself.

Whew, just in time. I dispose of the now wet and lumpy tissue, restock my pockets with fresh tissues, and wait for the next sneeze. They come quickly. Every fifteen minutes I race to try and grab the snot before she does. Occasionally she manages to get it first, and it's about a fifty-fifty shot that she'll clean herself up rather than smear the snot around. I know it's important she try to care for herself, but I wish she'd just let me do it. I'm getting tired of changing her shirt.

Sometimes the sneezes are tricky. She'll be walking into the kitchen with her walker and then suddenly stop, her eyes slightly crossing and her mouth open wide. She'll grab a tissue and hold it to her face. I will stand close by, a tissue in each hand, waiting. Will she sneeze, or not? Her mouth will open and close as if she's chewing on a giant piece of taffy and then she'll clamp her lips shut.

"Drat!" she'll say. "I hate it when that happens!"

Me too, baby.

And then, a few moments later, after we've both let down our guard... ACHOO!

This latest snot battle has gone for a week. Luckily she improved in time to go to her appointment at the Low Vision Clinic in Berkeley (more on that next time), and then she visited her dad for the weekend. I had one full day yesturday to rest from chasing snot and actually managed to drink an ENTIRE cup of coffee BEFORE it got cold. What a pleasure.

Last night, her dad called. "Queen Teen has a really runny nose and a temperature. What should I give her?"

I sighed. Looks like when she comes home this afternoon we'll be back to fighting snot. Oh well... I've had a day to rest, reload the tissue boxes, and drink so much tea I've flushed out any virus that might think of attacking me. I'm ready.

Tuesday, January 20, 2009

This morning I watched President Obama's swearing in ceremony live via Hulu with a very sick Queen Teen on my lap. I cheered and wiped her nose in between pointing out various people and images on the computer screen. I explained that what we were seeing on the screen was happening at that very moment in a place called Washington DC, as far away from us as New York City.

"Wow, that's a long way away," she said.

"Yep. It's pretty amazing we can watch what's happening right now on the other side of the country."

Although I reminded her how important this occasion was, that not only was a new president about to be sworn in, but the first BLACK president was being sworn in, she was a little bit bored with the whole thing. A blurry view of crowds, more blurry, mostly white faces in the official bleachers, banter from the commentators... and then Sasha and Malia arrived!

"Look! Those are President Obama's children. Shasha is about the same age you are."

Queen Teen sat up straighter and peered at the screen as the First Daughters arrived and took their seats in the front row. "Wow."

"Yeah. Isn't it neat. They're going to live in the White House with their parents. Can you imagine what it would be like to have your dad be president?"

She nodded and stared at the girls. "That's cool."

Then it was more boredom as more people she didn't know arrived, until Michelle Obama entered. I pointed at the screen. "That's their mom, Michelle."

"Pretty. I like her dress." Mrs. Obama wore bright yellow, a color my daughter has no trouble seeing. "Where are the girls?"

As past presidents and vice presidents and George Bush arrived, Queen Teen wiped her nose repeatedly and drank her juice. Then at last Barack Obama entered. I bounced in my seat excitedly and cheered.

"There he is! That's our new president!"

She squinted at the screen and smiled. "Cool."

"Remember we've never had a black president before. When I was a baby, a black child couldn't play with white children in some parts of the country."

She scowled. "That's silly."

"I know! And now we have a black president! And not only that, he's smart and knows how to be a president. I think he's going to be great."

Queen Teen nodded and smiled. Then she peered at the computer screen again. "Where are the girls."

She didn't stick around for the ceremony. When it was obvious the girls wouldn't be shown again, she hopped off my lap with her tissue box and went back to her room to play. Presidents are boring when you're thirteen. But Sasha and Malia, THEY are rock stars.

Wednesday, January 14, 2009

Over the holiday break, Queen Teen's teacher sent home the hearing aids again, and since QT was spending the entire break at home with me, there was no ready excuse to avoid the fight. So, one day I decided to face the battle full charge ahead.

"Hey sweet, you need to wear your hearing aids for a bit."

"Why?" QT said with a scowl.

"Because your teacher wants you to keep practicing."

"Why?" She crossed her arms.

"Because the more you wear them the sooner you get used to them. They won't bug you so much."

"Why?" Now her head was buried in her chest.

"Your hearing aids help you hear better."

She looked up at me with narrowed eyes. "No they don't."

"Yeah, they really do. I can tell the difference when you don't wear them. I don't have to yell so much."

"They bug me."

I was trying very hard to keep my voice calm, yet firm. But my frustration was growing.

"Just wear them for a couple of hours and then you can take a break."

"I don't want to."

"I want you to, though. And so do your teachers."

She started to cry. "They bug me!"

"What do you mean they bug you, honey?"

"They bother my ears."

"How so?"

"I don't know."

I looked at her ears, examining the inside curves for any sign of rubbing or irritation. "I don't see anything. Can you show me where it bugs you?"

She shrugged.

"Wear them for a little while and then you can take them out if they bug you too much."

She cried harder while I gently put the hearing aids in her ears. As soon as I was done, she shouted, "I don't like them!"

I hugged her and said, "I know. I'm sorry. I'm proud of you for trying." And then I left the room to let her collect herself.

A few minutes later I checked on her. She'd stopped crying, but her hearing aids were practically hanging out of her ears only attached by the ear molds.

"Honey, you have to keep them on."

"They bug me!"

I pushed the mechanical part behind her ears again. "Just for a little while."

I thought distraction might help. "Want to color?"

"No." She turned her back on me.

"Watch a movie?"

She shook her head.

I sighed and left the room again, only to discover a few minutes later that she'd pulled her hearing aids out from behind her ears to dangle like cream colored antenna.

This went on for almost an hour, and then I took them out. I tried again the next day, and the next, but it was always the same.

It is so hard to find the balance in this fight. She needs hearing aids, but she HATES them. I understand she's used to not hearing, so everything sounds weird when she wears the aids. I also know they really could be bothering her. Maybe they itch, or rub. Just because I can't see anything doesn't mean the irritation isn't there. But then when I add in the teen-age, fight mom at all cost, stubborn part of the equation it throws all the excuses out the door. So what is the answer then? Is she just being stubborn, or really having trouble, or all of the above?

She'll wear them at school, so I guess that will have to do for now. Except that her teacher sends them home on the weekends.

Sunday, January 4, 2009

I think the days between Thanksgiving and New Years are actually just a sanctioned time to not get any work done. Forget returning phone calls or finishing paperwork: it's the holidays. After grumpily trying to still manage my press while raising my daughter and organizing all of her doctor's appointments and documents, I gave in to the collective avoidance of work and relaxed. Once I did that, I had fun.

Tomorrow Queen Teen returns to school and I guess I'll have to get back to tackling my to-do list. But before I do, I'd like to write about my holiday with my girl.

Overall, it was a quiet season for us. No big trips or family plans. We spent Christmas Eve dinner with my brother and his family, but that was short and he only lives an hour away. Christmas Day was a stay home, stay in our pj's, open presents and eat when we want day.

I imagine this will be Queen Teen's last Santa Clause Christmas. She's 13. So seeing her face Christmas morning when she found her gifts next to the tree was extra sweet. Her eyes widened and she grinned when she saw that Santa had come again. He gave her a Groovy Girls Princess doll, several coloring books and new crayons, and a princess wand. He also gave her 10 Rugrats books, which she has read non-stop since Christmas.

Her favorite gift came from Rick; a Disney Princess play set with every classic princess. When she isn't reading her new books, she's playing with the princess figurines. I gave her a New York City snow globe to remember our trip to New York, and although she said it was pretty, she can't really play with it like she can Cinderella and Belle.

After Christmas came several days of boredom mixed with new toys. It's amazing how rapidly a teenage girl can vacillate between utter boredom to hysterical fun. One moment Cinderella is the best toy EVER and the next "there's nothing to play with!"

Fed up, I loaded us both into the car to visit my sister Tama at the Den of Chaos. My sister has four children, three girls and a boy, and with that many children under one roof things can get noisy. Queen Teen jumped right in, not minding the noise or tripping hazards of the toys lying around. She didn't want to climb the stairs this time, so Boo-Bug, Tama's youngest daughter, dutifully brought toys down stairs for Queen Teen to play with, which added to the confusion, but was better than climbing a flight of stairs.

Tama and I snuck out of the house for a couple of hours for some girl-time, leaving her husband in charge of five children, two of which have special needs. And neither of us felt guilty at all.

We were there for New Years and all the children did there best to stay up until midnight. Everyone made it but mine. We were watching the footage from Time's Square at 11:30, waiting for the ball to drop. I leaned close to Queen Teen and asked, "Do you remember when we were in New York?"

"Yes," she mumbled.

"That's what's on TV right now. We were right there in Times Square."

"Yes."

I looked at her and saw her red rimmed eyes were drooping and she was so tired she could barely lift her head to look at the TV. I took her hand. "Come on, baby. Let's get you to bed. I'll give you a kiss at midnight."

"Yes." I helped her stand and put her to bed. At midnight when I checked on her, she was sound asleep.

Back home, her boredom had vanished. I guess getting away from home for a few days is the cure. She helped me put Christmas away, played with her new toys and read her new books and is now excited to go back to school tomorrow. Me too! I can't wait to tackle all that work which was impossible to get done once Thanksgiving rolled in.

My daughter was born with visual, hearing, and motor impairments, so learning to walk was a difficult task. She used to fall down all the time! We started calling these falls a "Gravity Check," which made her laugh, get up off the floor, and try again.

Her Royal Highness, Queen Teen

This is Queen Teen, age 15. The little girl jumping on the bed is Queen Teen, age 4

About Me

Playwright, author, gardener, Super Mom, Johnny Depp fan and struggling Buddhist. Seriously, I really don't need to reach enlightenment in this life-time, so could you back off a little on the dharma lessons?